Children Who Mumble, Curse And Strike Out In Rage Soon Find Themselves Without Friends And Playmates

Science & medicine

Tourette's Ruins Lives

December 6, 1998|By Kansas City Star

KANSAS CITY, Mo. - Robbie Thompson is the only member left in his Boy Scout troop, but he is not alone in his fight to be like other boys and girls.

Robbie has Tourette's syndrome.

The neurological disorder makes the 11-year-old boy vulnerable to stress and can cause his emotions to run wild. At a Scout summer camp, he kicked another boy who teased him. Recently, parents already worried that his condition could endanger others pulled their sons from his troop.

Robbie's plight has drawn national exposure and focused attention on children throughout America with Tourette's.

But children like Robbie fight every day to be accepted and understood rather than feared.

Often, fear wins.

Not surprisingly, these children find themselves excluded.

``It's tough,'' Jeanne Dittman of Shawnee, Kan., said of raising her 14-year-old son, Chad, who was diagnosed with Tourette's when he was 9. ``My son just feels like he doesn't want to participate in group activities anymore, because he tried them when he was younger, and it didn't work.''

Yet Dittman understands others' fears. After all, she said, her son has kicked and hit her. That frightened her, but she has learned how to cope.

As much as she disliked the outcome of the dispute between Robbie and his Scout troop, Dittman said she could relate to the parents of the other boys in the troop who do not understand Tourette's as she does.

What frustrates Dittman is the misconceptions surrounding the disorder.

A Yale University study explains how Tourette's manifests itself.

The study of nearly 200 children with Tourette's found that when those children were under stress, there was less activity in the ``thinking'' part of the brain and higher activity in the ``feeling'' area. Simply put, the neurologically impaired children were reacting from a chemical imbalance in the brain rather than willful behavior.

``When these children are under stress, they have lots of urges and lots of feelings, but they're not thinking,'' said Jack Southwick, a social worker at Kansas City's Joshua Child and Family Development Center, which helps Tourette's children and their families.

Such circumstances can lead to what Southwick describes as a rage. The excitement or stress builds up in a child and suddenly erupts into action.

Southwick emphasized children with neurological disorders do not respond to discipline that works with other youngsters.

He also said that once a rage hits in those with Tourette's, the best thing to do is to wait until it passes, and then discuss the matter and impose discipline when the child calms.

Parents often want to know what to do when they are threatened by their own children, and teachers ask how to handle a rage in a classroom setting, where equal discipline of students is expected.

Southwick suggests trial and error and plenty of patience.

Dittman has had to learn such patience.

The 41-year-old divorced mother said her son also had attention deficit hyperactive disorder and obsessive compulsive disorder. Many with Tourette's have the other disorders and call the combination Tourette's Plus. Most of the time his symptoms are limited to blurting out and mumbling.

The dilemma leads many to cast Tourette's children off a ball team or out of a mainstream classroom.

Marilyn McGee says her son, Jesse, has Tourette's Plus. In part, she moved away from the Missouri town in which she lived for 25 years because of a clash with the school district over disciplinary tactics. She also wanted to be closer to the Joshua center.

``I finally quit'' trying to handle the situation alone, she said of her move to Raytown, near Kansas City. ``It was devastating.''